Another thing

I saw on my neurologist report something that said (abnormal sp/ap ratios to independent left and right stimulation consistent with bilateral labyrinthine dysfuntion) I don’t know what it means and the MRI did not show a reason for the neragias.

What I read at the Johns Hopkins Neurosurgery department website states Bilateral Labyrinthine dysfuntion is a vestibular problem that can result in problems with both vision and hearing. Do you ever go on facebook. I can link the page from Johns Hopkins there, but there is no way I can link the page here.

yes, thank you. Now I understand why I don’t feel like I can be on the computer without feeling sick, its a not knowing your dizzy thing I guess.

Sarah Hobbs said:

What I read at the Johns Hopkins Neurosurgery department website states Bilateral Labyrinthine dysfuntion is a vestibular problem that can result in problems with both vision and hearing. Do you ever go on facebook. I can link the page from Johns Hopkins there, but there is no way I can link the page here.

Very well could be. Vestibular problems can be very obvious or very subtle. Article did mention people with this disorder can have real problems driving in a car and not know why. Will send it to you.
hang in there.

Hugs,
Sarah

Diana Parker said:

yes, thank you. Now I understand why I don’t feel like I can be on the computer without feeling sick, its a not knowing your dizzy thing I guess.

Sarah Hobbs said:
What I read at the Johns Hopkins Neurosurgery department website states Bilateral Labyrinthine dysfuntion is a vestibular problem that can result in problems with both vision and hearing. Do you ever go on facebook. I can link the page from Johns Hopkins there, but there is no way I can link the page here.

The dizziness is part of the bilateral labyrinthine dysfunction. I have impaired labyrinth function, along with deafness, but despite having a known neuropathy my doctors think the deafness, tinnitus and vertigo are a different disease. I find it rather confusing, and I think different doctors often have differing opinions. I think the most important thing is to have thorough testing to identify possible causes, but it’s quite an exhausting process.
Do you take any medications for the dizziness?
Unfortunately some of the drugs taken for neuralgias have dizziness as a side-effect, which confuses the issue even more.
jon

Thanks for your answer Johnathan, I to have deafness and intermittent tinnitus, the vertigo started last year after having non stop attacks of Geniculate Neuralgia. They have done tons of test on me. If I did not get my hands on the neuros report I would never know I had this. The first attack (really bad) of vertigo I had I thought I was having some sort of stroke or something, I could not even see well and so I went to the hospital and the Dr. said my eyes were dancing and told me I had vertigo and gave me a scrip (forgot the name) think it started with “M” but did not help much. I bought over the counter stuff, does not help much either. I did not take the meds for the neuralgias for long, I was allergic to them.
How do you deal with it. I noticed I have been dealing with it the wrong way and avoiding anything that makes me feel sick and thats bad because it almost everything I need to do.

Jonathan Leonard said:

The dizziness is part of the bilateral labyrinthine dysfunction. I have impaired labyrinth function, along with deafness, but despite having a known neuropathy my doctors think the deafness, tinnitus and vertigo are a different disease. I find it rather confusing, and I think different doctors often have differing opinions. I think the most important thing is to have thorough testing to identify possible causes, but it’s quite an exhausting process.
Do you take any medications for the dizziness?

Unfortunately some of the drugs taken for neuralgias have dizziness as a side-effect, which confuses the issue even more.

jon

I have a question for you, do you someitmes have fluid drip out of your ears, not ear wax, clear stuff?

Jonathan Leonard said:

The dizziness is part of the bilateral labyrinthine dysfunction. I have impaired labyrinth function, along with deafness, but despite having a known neuropathy my doctors think the deafness, tinnitus and vertigo are a different disease. I find it rather confusing, and I think different doctors often have differing opinions. I think the most important thing is to have thorough testing to identify possible causes, but it’s quite an exhausting process.
Do you take any medications for the dizziness?

Unfortunately some of the drugs taken for neuralgias have dizziness as a side-effect, which confuses the issue even more.

jon

Diana, vertigo is difficult to cope with, I usually have to take an anti-emetic, in the UK there is a drug called cinnarizine, which is an anti-histamine, which helps stem the nausea and clams the vertigo a bit. I think the drug you had may have been meclizine (antivert?), it’s another anti-histamine.
There is a form of therapy for vertigo and dizziness, VRT - Vestibular Rehabilitation Therapy. It is supposed to help recovery from episodes of vertigo. I’m not sure it’s that helpful during episodes though, and may actually make things temporarily worse. It does involve exercises which ‘challenge’ and work the vestibular system.
Have you seen the Vestibular Disorders Association website, VEDA, they have plenty of information about the different forms and treatments.
VEDA
With the clear liquid, I once had a outer ear infection which caused a clearish fluid to leak out, along with a fair bit of swelling of the outer ear canal. It cleared up with anti-biotics. I think that was unrelated to my hearing and dizziness problems, except for making them temporarily worse.

Thank you for the information, I have to talk to my doctor about the vertigo again because the neuro did not even tell me about it, I found it in my records. The liquid in my ear happens from time to time and when I go to the doctor for I never seem to have an infection, always tells me I have the cleanest ears he has ever seen. Its very frustrating.

Jonathan Leonard said:

Diana, vertigo is difficult to cope with, I usually have to take an anti-emetic, in the UK there is a drug called cinnarizine, which is an anti-histamine, which helps stem the nausea and clams the vertigo a bit. I think the drug you had may have been meclizine (antivert?), it’s another anti-histamine.
There is a form of therapy for vertigo and dizziness, VRT - Vestibular Rehabilitation Therapy. It is supposed to help recovery from episodes of vertigo. I’m not sure it’s that helpful during episodes though, and may actually make things temporarily worse. It does involve exercises which ‘challenge’ and work the vestibular system.

Have you seen the Vestibular Disorders Association website, VEDA, they have plenty of information about the different forms and treatments.

VEDA

With the clear liquid, I once had a outer ear infection which caused a clearish fluid to leak out, along with a fair bit of swelling of the outer ear canal. It cleared up with anti-biotics. I think that was unrelated to my hearing and dizziness problems, except for making them temporarily worse.

Went to the doc today and he said I have fluid behind my ear, but no infection. LOL Not much help that was, did not change a thing!

Diana Parker said:

Thank you for the information, I have to talk to my doctor about the vertigo again because the neuro did not even tell me about it, I found it in my records. The liquid in my ear happens from time to time and when I go to the doctor for I never seem to have an infection, always tells me I have the cleanest ears he has ever seen. Its very frustrating.


Jonathan Leonard said:
Diana, vertigo is difficult to cope with, I usually have to take an anti-emetic, in the UK there is a drug called cinnarizine, which is an anti-histamine, which helps stem the nausea and clams the vertigo a bit. I think the drug you had may have been meclizine (antivert?), it’s another anti-histamine.
There is a form of therapy for vertigo and dizziness, VRT - Vestibular Rehabilitation Therapy. It is supposed to help recovery from episodes of vertigo. I’m not sure it’s that helpful during episodes though, and may actually make things temporarily worse. It does involve exercises which ‘challenge’ and work the vestibular system.
Have you seen the Vestibular Disorders Association website, VEDA, they have plenty of information about the different forms and treatments.

VEDA

With the clear liquid, I once had a outer ear infection which caused a clearish fluid to leak out, along with a fair bit of swelling of the outer ear canal. It cleared up with anti-biotics. I think that was unrelated to my hearing and dizziness problems, except for making them temporarily worse.